Good Day to all. Today I saw the documentary; Spark. Spark is a roundtable discussion of neurologists, neuroscientists, psychiatrists, and Robin Williams wife, Susan. During the segment all participated some, while Susan participated the most.
In the beginning, we here of the Williams’ trek to just get a diagnosis. It took 10 months. They were originally diagnosed with Parkinson’s. This is something that we all experienced at one point or another. My diagnosis took over a year and was only given the Lewy diagnosis after a third appointment. Another similarity with the Williams is that most doctors have no idea what Lewy Bodies are and that there is a neurodegenerative disease named for them. This is a true shame as over 1.4 million people have this foul disease.
Susan goes on to explain Robin’s early symptoms, sleep disorder, acting out dreams, delusions and hallucinations. As she was talking, Susan said she was aware everyone’s path was different but the stops on the path are very similar. She and Robin would take Robin out for walks and at times he had trouble realizing where he was on occasion. During this time Robin was still touring, his last tour, and he would leave Susan messages every night on her phone. She still has them and played them. All love style messages and the most powerful moments. They are messages from over a year ago that she listens to often.
Many people realize that Robin Williams took his own life. What most people don’t realize is that Robin had many extraordinary circumstances. That’s what Lewy Body gives you, many extraordinary circumstances. Although Susan Williams wishes she could do more, she knows now that no matter how much she did, she couldn’t save Robin from Lewy. Unfortunately as a caregiver, she didn’t know that Robin had Lewy Bodies running through his brain. As a Lewy myself, I know how important it is for my wife to know. Until the diagnosis our house was in an abyss of worry, disagreements, acting put my dreams and forgetfulness. We have done alot of research on our own and have a good neurologist who will answer our questions.
Robin Williams death by his own hand was also a byproduct of his Lewy. No one knew that Robin had Lewy Bodies all through his brain according to an autopsy performed on him. Robin’s death as traumatic and terrible as it was, is also a beacon of light to the LBD community. More information is available to the public and more doctors are getting educated about this horrid disease. So Robin, in his own way, helped others even in his death.
Today’s showing of this documentary was available by invitation to members of certain LBD groups. If you see it available or look it up on line, I highly suggest you watch it. It is simply called “Spark”. Like Robin was the spark that brought more light to Lewy Body Dementia.
This documentary also proved that you have to keep after doctors for a diagnosis. I went to my primary and 3 neurologist before I received a firm diagnosis. Keep pushing if you have symptoms, keep asking questions. And caregivers, believe your loved ones if they are giving you whacky symptoms because they probably have them. Good Luck and God Bless all my Lewy Buddies.